The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 09 September 2016 09 September 2016
A letter to NIH Director Dr. Francis Collins supporting ME/CFS research and calling for a report to Congress, sponsored by Representatives Zoe Lofgren and Anna G. Eshoo of California, got 55 House member signatures and was sent to Dr. Collins today. This effort was led by a collaboration between #MEAction, Solve CFS/ME Initiative, and a number of other advocates and patient groups including Massachusetts CFIDS/ME & FM Association. This was a bi-partisan effort, and received support from over 10% of members of Congress, certainly a very strong showing! Congratulations to all on this successful outcome.
New England Representatives who signed the letter are:
Massachusetts: Joseph Kennedy III, Katherine Clark, James McGovern
New Hampshire: Frank Guinta
Maine: Chellie Pingree
Connecticut: Elizabeth Esty
Vermont: Peter Welsh
If you live in one of these districts, please send your Representative a thank you note!
- Last Updated: 07 September 2016 07 September 2016
We know ADVOCACY WORKS (see more below).
You can help if you ACT NOW !!
A letter in support of ME/CFS research to NIH Director Dr. Francis Collins, sponsored by two Representatives from California, is now circulating in Congress (House of Representatives) and we need as many U.S. Representatives as we can to be co-signers. Please CALL and send a FOLLOW-UP EMAIL to your U.S. Representative (not your Senators) and urge him or her to sign this letter. Complete instructions, including a phone and email script which you can personalize, can be found here. The number of calls to each Congressional office to make this request really matters. Your Representative may not be inclined to act as a result of one or two calls, but 10 calls will make a strong statement. Please call right away. The deadline for your Representative to sign the letter has been extended to Wednesday, Sept 7, 2016.
This action is the result of months of hard work by #MEAction, Solve CFS/ME Initiative, and the U.S. Action Working Group Congressional Committee, of which Massaschusetts CFIDS/ME & FM Association is a member.
GET and CBT have been downgraded as treatments for ME/CFS as a result of follow up work by the Agency for Healthcare Research and Quality.
In the initial Evidence Review prepared by AHRQ as input to the Pathways to Prevention (P2P) report commissioned by NIH, studies evaluating the effectiveness of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) which used subjects meeting only the Oxford case definition (6 months of fatigue). Based on the initial inclusion of studies using the Oxford definition, notably the PACE trials, the Evidence Review suggested that GET and CBT were "moderately effective" treatments. The P2P report recommended that the Oxford definition no longer be used, and the PACE research has come under increasing criticism for its methodology.
As a result of advocates requests, AHRQ re-analyzed the evidence for GET and CBT, without including any studies based on the Oxford definition (e.g. PACE). The conclusion was that there was no evidence to suggest that GET or CBT were effective treatments for ME/CFS. Read more here.
This outcome is the direct result of repeated requests to AHRQ by advocates. Advocates' next step is to make sure that this change is strongly noted in future medical education materials, particularly the websites commonly used by doctors, such as the Centers for Disease Control and Prevention (CDC), Mayo Clinic and Up To Date.
Ampligen has been approved for use for severe ME/CFS patients in Argentina
While advocates continue to press for approval of Ampligen in the U.S., the drug has been approved for use in Argentina, a country which has a rigorous drug-approval process similar to the U.S. This is the first-ever approved drug treatment for ME/CFS anywhere in the world, and will hopefully encourage other countries to follow suit.
Greater Boston area event October 11
Save the Date! You are invited to a screening of the film "Forgotten Plague" on Tuesday, October 11, at 6 p.m. at St. Elizabeth's Hospital in Brighton/Boston, Rm 5 in the St. Margaret's Center building. The 90-minute film will be followed by questions and discussion. Invite family members and friends. Read a description and review.
We are looking for a few committed volunteers!
Our most requested service is helping patients find knowledgeable health care providers (primarily in Massachusetts, but we are hoping to expand to surrounding NE states). Volunteers may spend up to 1-3 hours per week, working at home from your own computer. Training is provided and a 6-12 month commitment is requested. Requirements: email, internet access, ability to learn to use a simple database. Join a small team providing this valuable service!
Help plan our public events!
Our next large event is Nov. 5 and will take place in Natick, MA. Our speaker is Dr. Anthony Komaroff, who will review and take questions on the very latest research that was presented at the October 2016 conference of the International Association for CFS/ME. This event will be videorecorded and posted on YouTube. Help plan the event (develop publicity, help with registration and meeting logistics, plan and help with refreshments). Volunteers will work with others to plan, and ideally should be able to attend the event in person. Short term commitment.
Volunteers can also plan smaller events/gatherings in their local area (doesn't have to be in Massaschusetts). A simple and effective program is a screening of the film "Forgotten Plague" for a small group in your home or a local public space such as a library or community room. We will provide guidance and all materials. Short term commitment.
Join our Events Committee and help make these things happen! One-year commitment.
One or two writers/editors to help with our monthly e-newsletter (help make it be monthly!), working with one of our Board members. Requirements: reasonable knowledge of ME/CFS, ability to select and write relevant and interesting content, sometimes around a theme you select. We provide items you can consider, or you may find your own. Our newsletter goes around the world! Longer-term commitment for someone who has a serious interest in communications and dedication to helping the cause for patients with ME.
If you are interested in volunteering, please email Info "at" Masscfids.org to let us know.
- Last Updated: 29 June 2016 29 June 2016
For years our ME/CFS patient community has felt ignored and abandoned by our federal government. While other diseases got attention and research funding, ME/CFS got pitifully little except a few dimes and lip service. All that seems to be changing. With the Request for Information (RFI) issued on May 24, 2016, the National Institutes of Health invited the ME/CFS patient community to participate in setting new directions in research into this disease.
Our Association's Board of Directors signed on to two letters with suggestions to NIH, one with a comprehensive list of suggestions, and one specifically about clinical trials for Ampligen and rituximab. Both letters were prepared by members of the U.S. Action Working Group, in which our Association is a participant. Two earlier letters were also re-submitted to become part of the response to the RFI, one focused on research, and one with suggestions on getting input from the ME/CFS community. In addition, several members of our Board of Directors sent individual responses to the RFI. We hope that some of you did as well. Patients and advocates finally have a seat at the table. Now we can and must speak up.
- Last Updated: 26 May 2016 26 May 2016
“Millions Missing” global day of protest — Boston!
#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.
On May 25th, 2016 #MEAction organized a global day of action for equality for ME. ME patients, advocates, caregivers, and allies joined together to protest the lack of government funding for research, clinical trials and medical/public education, which has left ME patients without relief for years and even decades.
In Boston, we gathered at the JFK Federal Building. We had signs and information to hand out, as well as a petition to collect signatures supporting more funding for ME/CFS. We also talked to people who stopped by and made new friends.
We met separately with senior officials from the Boston branch of Health & Human Services to deliver our message and ask for their support. They were very well informed, understood our issues, and asked great questions. We see this as the beginning of an on-going relationship.
- Last Updated: 16 April 2016 16 April 2016
April 15, 2016. Massachusetts CFIDS/ME & FM Association has endorsed Outside Witness Testimony to Congress, prepared by the U.S. Action Working Group (USAWG) and filed today with the House and Senate Appropriations Committees.
The Testimony provides members of the Committees with information about ME/CFS and makes the following funding requests:
- CDC: Restore funding for ME/CFS in FY17 budget - $6 MM
- HHS/Assistant Secretary for Health – Office of Women’s Health: Continue funding for Chronic Fatigue Syndrome Advisory Committee - $300,000
- NIH: Follow through on recent statements to patients by providing significant and specific funding for ME/CFS research, including RFAs
The U.S. Action Working Group is a coordinating committee for a number of non-profit organizations and patient/advocates working to advance research on the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
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Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.